Discussions By Condition: I cannot get a diagnosis.

More Than Fibromyalgia?

As a teenager I was diagnosed with Chronic Fatigue Syndrome. I was later given an additional diagnosis of Fibromyalgia but have never been fully comfortable with this as I believe I have symptoms in addition to Fibro that have not been diagnosed. I am now in my mid 40s.

Certainly I have many of the symptoms of Fibromyalgia-- exhaustion, pain in the tender points and soft tissues, poor concentration, short-term memory loss, brain fog, balance/dizziness issues; but I also have horrible pain along the bones on the inside of both lower legs. I liken it to a low level electric current with intermittent short stabbing pains. If any form of pressure is applied or if I knock my legs against something--however lightly--the pain is like a blow from a hammer.

I have similar pain in both arms along the bone of the forearms and even laying my arms (soft tissue or bone) or elbows on a table can be too much to bear. Bumping into something with my arms produces a nauseous, dizzy feeling throughout my body. Sitting on most chairs is also extremely painful as the pressure feels like a vile form of pins and needles under my thighs.

I struggle to get to sleep each night because it hurts to lay my legs on the mattress, and I wake up every morning because of the discomfort which quickly becomes unbearable until I am forced to get up.

The pain is in all extremities but not in my trunk and is far worse on the right side. It feels like my nerves are on fire. The most frustrating thing is that I sit or lay down to relax because of the pressure on my legs and arms so always need to keep moving.

Some other symptoms: writing has deteriorated, trembling in arms and legs, discomfort touching objects with fingertips, occasional difficulty with finger dexterity in holding onto objects, pain in lifting right arm (it feels like lead), constant feeling of being disoriented and sick, skin feels as if it is “crawling”.

For years I went to work and in spite of being completely exhausted by early afternoon managed to get through the day even though I would fall asleep the second I got on the bus to go home.

But last fall all my symptoms got worse over a period of a couple of months. The pain in my arms and legs (I sit all day) became harder and harder to deal with. I felt so chronically ill.

One reason I struggle with just a diagnosis of Fibromyalgia is because I get no flare ups. Walking is my salvation and is my only means of finding temporary relief. Sitting or being immobile and the resultant pain are the worst thing I can imagine.

I have seen so many neurologists, rheumatologists and a chronic pain specialist but they all say it is Fibro, whereas to me it feels more nerve-related. I am also puzzled by the fact that the pain is far worse on the right side of my body and because I feel pain in my bones, not just my muscles.

5 Replies:

As a teenager I was diagnosed with Chronic Fatigue Syndrome. I was later given an additional diagnosis of Fibromyalgia but have never been fully comfortable with this as I believe I have symptoms in addition to Fibro that have not been diagnosed. I am now in my mid 40s. Certainly I have many of the symptoms of Fibromyalgia-- exhaustion, pain in the tender points and soft tissues, poor concentration, short-term memory loss, brain fog, balance/dizziness issues; but I also have horrible pain along the bones on the inside of both lower legs. I liken it to a low level electric current with intermittent short stabbing pains. If any form of pressure is applied or if I knock my legs against something--however lightly--the pain is like a blow from a hammer. I have similar pain in both arms along the bone of the forearms and even laying my arms (soft tissue or bone) or elbows on a table can be too much to bear. Bumping into something with my arms produces a nauseous, dizzy feeling throughout my body. Sitting on most chairs is also extremely painful as the pressure feels like a vile form of pins and needles under my thighs. I struggle to get to sleep each night because it hurts to lay my legs on the mattress, and I wake up every morning because of the discomfort which quickly becomes unbearable until I am forced to get up. The pain is in all extremities but not in my trunk and is far worse on the right side. It feels like my nerves are on fire. The most frustrating thing is that I sit or lay down to relax because of the pressure on my legs and arms so always need to keep moving. Some other symptoms: writing has deteriorated, trembling in arms and legs, discomfort touching objects with fingertips, occasional difficulty with finger dexterity in holding onto objects, pain in lifting right arm (it feels like lead), constant feeling of being disoriented and sick, skin feels as if it is “crawling”. For years I went to work and in spite of being completely exhausted by early afternoon managed to get through the day even though I would fall asleep the second I got on the bus to go home. But last fall all my symptoms got worse over a period of a couple of months. The pain in my arms and legs (I sit all day) became harder and harder to deal with. I felt so chronically ill. One reason I struggle with just a diagnosis of Fibromyalgia is because I get no flare ups. Walking is my salvation and is my only means of finding temporary relief. Sitting or being immobile and the resultant pain are the worst thing I can imagine. I have seen so many neurologists, rheumatologists and a chronic pain specialist but they all say it is Fibro, whereas to me it feels more nerve-related. I am also puzzled by the fact that the pain is far worse on the right side of my body and because I feel pain in my bones, not just my muscles.It is called myofacial pain, and is common with fibro people. I have it to a degree. I can feel fingers on my skin long after they have left touching me. And shaking hands is like shaking a vice grip.

Fibromyalgia patients get all kinds of pains including bone pains. CFS can cause tremoring and feeling very ill. CFS and Fibro are over lapping illnesses with up to 75% of CFS patients getting Fibro too. All your symptoms may be caused by these two conditions.

As a teenager I was diagnosed with Chronic Fatigue Syndrome. I was later given an additional diagnosis of Fibromyalgia but have never been fully comfortable with this as I believe I have symptoms in addition to Fibro that have not been diagnosed. I am now in my mid 40s. Certainly I have many of the symptoms of Fibromyalgia-- exhaustion, pain in the tender points and soft tissues, poor concentration, short-term memory loss, brain fog, balance/dizziness issues; but I also have horrible pain along the bones on the inside of both lower legs. I liken it to a low level electric current with intermittent short stabbing pains. If any form of pressure is applied or if I knock my legs against something--however lightly--the pain is like a blow from a hammer. I have similar pain in both arms along the bone of the forearms and even laying my arms (soft tissue or bone) or elbows on a table can be too much to bear. Bumping into something with my arms produces a nauseous, dizzy feeling throughout my body. Sitting on most chairs is also extremely painful as the pressure feels like a vile form of pins and needles under my thighs. I struggle to get to sleep each night because it hurts to lay my legs on the mattress, and I wake up every morning because of the discomfort which quickly becomes unbearable until I am forced to get up. The pain is in all extremities but not in my trunk and is far worse on the right side. It feels like my nerves are on fire. The most frustrating thing is that I sit or lay down to relax because of the pressure on my legs and arms so always need to keep moving. Some other symptoms: writing has deteriorated, trembling in arms and legs, discomfort touching objects with fingertips, occasional difficulty with finger dexterity in holding onto objects, pain in lifting right arm (it feels like lead), constant feeling of being disoriented and sick, skin feels as if it is “crawling”. For years I went to work and in spite of being completely exhausted by early afternoon managed to get through the day even though I would fall asleep the second I got on the bus to go home. But last fall all my symptoms got worse over a period of a couple of months. The pain in my arms and legs (I sit all day) became harder and harder to deal with. I felt so chronically ill. One reason I struggle with just a diagnosis of Fibromyalgia is because I get no flare ups. Walking is my salvation and is my only means of finding temporary relief. Sitting or being immobile and the resultant pain are the worst thing I can imagine. I have seen so many neurologists, rheumatologists and a chronic pain specialist but they all say it is Fibro, whereas to me it feels more nerve-related. I am also puzzled by the fact that the pain is far worse on the right side of my body and because I feel pain in my bones, not just my muscles. I am not sure if this will help you at all but here is a good read on inflammation in the body and the health issues it can cause. Hope it helps! http://www.SecretKillerAlert.com

LOOK UP THE SYMPTOMS OF LYME DISEASE!!!!! Find the movie UNDER OUR SKIN and Watch it!!!!Good Luck, I wish you well.Check out these sites: http://www.facebook.com/UNDEROURSKIN?v=app_4949752878http://www.facebook.com/lifeafterlymehttp://www.publichealthalert.org/http://www.personalconsult.com/free/books.htmlAs a teenager I was diagnosed with Chronic Fatigue Syndrome. I was later given an additional diagnosis of Fibromyalgia but have never been fully comfortable with this as I believe I have symptoms in addition to Fibro that have not been diagnosed. I am now in my mid 40s. Certainly I have many of the symptoms of Fibromyalgia-- exhaustion, pain in the tender points and soft tissues, poor concentration, short-term memory loss, brain fog, balance/dizziness issues; but I also have horrible pain along the bones on the inside of both lower legs. I liken it to a low level electric current with intermittent short stabbing pains. If any form of pressure is applied or if I knock my legs against something--however lightly--the pain is like a blow from a hammer. I have similar pain in both arms along the bone of the forearms and even laying my arms (soft tissue or bone) or elbows on a table can be too much to bear. Bumping into something with my arms produces a nauseous, dizzy feeling throughout my body. Sitting on most chairs is also extremely painful as the pressure feels like a vile form of pins and needles under my thighs. I struggle to get to sleep each night because it hurts to lay my legs on the mattress, and I wake up every morning because of the discomfort which quickly becomes unbearable until I am forced to get up. The pain is in all extremities but not in my trunk and is far worse on the right side. It feels like my nerves are on fire. The most frustrating thing is that I sit or lay down to relax because of the pressure on my legs and arms so always need to keep moving. Some other symptoms: writing has deteriorated, trembling in arms and legs, discomfort touching objects with fingertips, occasional difficulty with finger dexterity in holding onto objects, pain in lifting right arm (it feels like lead), constant feeling of being disoriented and sick, skin feels as if it is “crawling”. For years I went to work and in spite of being completely exhausted by early afternoon managed to get through the day even though I would fall asleep the second I got on the bus to go home. But last fall all my symptoms got worse over a period of a couple of months. The pain in my arms and legs (I sit all day) became harder and harder to deal with. I felt so chronically ill. One reason I struggle with just a diagnosis of Fibromyalgia is because I get no flare ups. Walking is my salvation and is my only means of finding temporary relief. Sitting or being immobile and the resultant pain are the worst thing I can imagine. I have seen so many neurologists, rheumatologists and a chronic pain specialist but they all say it is Fibro, whereas to me it feels more nerve-related. I am also puzzled by the fact that the pain is far worse on the right side of my body and because I feel pain in my bones, not just my muscles.